Medical professionals will receive free training to recognise symptoms of MND under a new programme.
My Name’s Doddie, the charity foundation set up by Scotland rugby star Doddie Weir, who died after being diagnosed with MND, is launching the first programme of its kind in the UK.
Developed by the International Alliance of ALS/MND Organisations, the RACE to Diagnose programme will provide guidance for a range of professionals who may encounter MND, but who do not routinely work with it, including speech and language therapists and ear, nose and throat specialists.
It will help healthcare teams understand how to recognise early signs of symptoms of MND, such as difficulty swallowing and changes to tongue muscles, communicate the need for urgent specialist assessment and expedite referrals without complete diagnostic confirmation.
The training also shows how to explain an urgent referral without causing unnecessary alarm, and what clinical details to include so specialist teams can assess and prioritise whoever has been referred.
Jessica Lee, Research Director at My Name’s Dobbie, said: "MND is not common, its early signs can vary considerably and there is no single test that tells you conclusively that someone has it. That means people can move between different parts of the healthcare system before they reach the right specialist.
“Race to Diagnose gives professionals practical guidance on what to look for, how to assess what they are seeing and when to make an urgent referral.
"As treatments begin to emerge, reaching people earlier in the course of the disease may be critical to giving those treatments the best possible chance of having an effect.”
Andy Vaughton, who lives with MND, is one of the inspirations behind the programme’s launch.
Andy’s symptoms were initially linked to other nerve problems and a serious skiing injury, and he underwent potentially unnecessary surgery in 2020 for nerve damage before receiving his MND diagnosis the following year.
As a former doctor himself, Andy understands how difficult the disease can be to recognise in its early stages. But as someone living with MND, he knows that an earlier diagnosis can make a big difference for people and their families.
Speaking on the importance of an earlier diagnosis, Andy said: "For most people, MND doesn't progress as slowly as it has for me. You need time to process what is happening, access the care you are going to require and bring together all the hospital specialists who will be involved.
“If this training gives professionals greater confidence to investigate or refer someone sooner, it could give people valuable time to access care, consider treatment and make decisions about their future."
RACE to Diagnose is now available to medical professionals across a range of disciplines, and My Name’s Dobbie is supporting the adaption and dissemination of the programme across the UK.